Who are we?

We are individuals and families affected by FSHD, representing all ages and abilities—including those under 18, over 65, and wheelchair users. United by our shared experiences and determination, we are fighting for a cure that leaves no one behind. Our diverse community is a testament to the strength and resilience of those living with FSHD, and we are committed to ensuring that every voice is heard and every person has access to the potentially life-saving treatments they deserve.